Monday morning blood tests revealed my creatine kinase levels have spiked. Tuesday, May 18, my throat ached and swelled. By Thursday evening, congestion made breathing through my nose difficult. Friday morning, I could feel my immune system ripping apart my muscles and inflaming and stretching my skin. I told my sister I felt like I had the flu after being beaten up by a football defensive end.
Fortunately, I never had a cough or any remote respiratory impairment, so whatever this is, it is likely not COVID-19. And my typing this on a Sunday afternoon is proof enough that I am on the road to recovery.
What concerns me, however, are my muscle aches. Though the pain is not debilitating, it is sore—the same way one feels a day after an intense workout. In conjunction with my elevated creatine kinase levels, this means my immune system for the first time in 2 years is back to attacking my muscles—even while taking drugs to suppress it.
It can hardly be coincidence this is happening while I am ill. Though I need to confirm with a doctor, I suspect my suppressed immune system had been struggling to rid of the infection and geared into hyperdrive to destroy whatever virus inhabits my body.
These events come as a setback after more than a year in a drug trial. I messaged the dermatologist running the trial about what has been going on. I can only hope this dermatomyositis flareup soon extinguishes itself, and that the new drugs have not failed.
Tapering down my corticosteroids and battling a run-of-the-mill cold while on immunosuppressants have left me exhausted this week.
Corticosteroids like prednisone are a first-line treatment for dermatomyositis and other autoimmune diseases but they can have serious side effects, especially when used over multiple months.
Side effects of corticosteroids
No one should be on moderate to high doses prednisone or any corticosteroid for forever. Long-term corticosteroid use has several side effects: cataracts, bone loss, easy bruising, muscle weakness, weight gain, high blood sugar, psychosis, infection, and heart disease. People with healthy immune systems should not use them more than a couple weeks. Not unlike heroin detoxification, anyone who does use them for more than a few weeks has to taper down to lower and lower doses until you ween yourself off them.
Interestingly, even short-term steroid use has positive temporary side effects: namely, steroid euphoria. When you take the drug, you feel happy, positive, like you can conquer the world.
You can also have surpluses of energy, functioning on five to six hours of sleep just fine. I actually started this blog last July, during one of my steroid highs.
Corticosteroids screw with my mental health
As you taper down, each subsequent smaller dose deprives you of that drug-induced happiness. Much like someone weening themselves off opiates, you become physically depressed.
For almost nine months, my doctors have been varying doses of corticosteroids, trying to ween me off, only to put me back on moderate doses when my other medications fail.
This has been a mental and physical health nightmare, causing me to feel, at times, bipolar. One month, I get 30 or 40 mg of prednisone each day. The next, I taper down to 20 mg. At one point, I was on only 12.5 mg per day. Lately, I am down to 17.5 mg, leaving me feeling depressed.
Battling a common cold while suppressing my immune system
I also had a cold this week, my second of 2019 (the last ruined my New Year and my vacation). Just the usual symptoms: nasal congestion, ear and headaches, dehydration, fatigue.
Unlike people with healthy immune systems, my body seems to slow down more when I get sick. Several of my coworkers were still functioning the whole week while infected with the same virus, while I had to take a day and a half off work. Tuesday, I did nothing but watch YouTube videos of chef knife reviews. I have not been to the gym in a week. I ate junk food trying to make myself feel better.
Positive note: Even if immunosuppressants like methotrexate, azathioprine, and hydroxychloroquine leave me down for the count when a cold strikes, prednisone is like Aleve (naproxen) or Advil (ibuprofen) on steroids (pun intended). I barely notice nasal congestion or ear aches after I take prednisone in the morning. At night, however, I struggled to breathe normally.
I feel much better today, but now I have a new concern: a new, unexplained allergic reaction.
